Treatment with Disulfiram (Antabuse) seems to help

Dechi

Dechi

Senior Member (Voting Rights)
I’ve recently started a treatment with Disulfiram. My doctor thinks there is a possibility that I have Lyme and put me on antibiotics. After reading a lot about it, I’ve decided I didn’t want to go that route. Meanwhile, I learned about a new Lyme treatment with Disulfiram that was supposedly giving good results for some people and that needed to be taken a few months only, and never again. So I decided that’s what I wanted.

I’m not convinced I have Lyme at all, but I think Disulfiram could help me, no matter what I have.

I don’t want to jinx it, but I seem to be having results, even at the low dose I’m at (I’m going very slowly). It’s never happened before with any medication. Ever. But the lactic acid build-up seems less than usual.

It’s still really early and I won’t know for many weeks if it’s working, but I thought I’d mention it, in case someone else wants to read on it or even try it.

https://www.lymedisease.org/disulfiram-kinderlehrer/
 
It's interesting LDN is already used in me/cfs sometimes, I have often wanted to try campral - a drug that might be a palliative to pain and malaise by modulating gaba a and antagonizing NMDA receptors.

Disu is intersting - remember Ron Davis saying CFS genetics look a lot like african sleeping sickness - while disu increases tryptophol, which is increased in african sleeping sickness. But the mechanism suggested by your link is antimicrobial.

I'll be interested to here how it works out for you and hope you avoid the neuropathies that are sometimes sideffect.
 
Dechi said:
I’ve recently started a treatment with Disulfiram. My doctor thinks there is a possibility that I have Lyme and put me on antibiotics. After reading a lot about it, I’ve decided I didn’t want to go that route. Meanwhile, I learned about a new Lyme treatment with Disulfiram that was supposedly giving good results for some people and that needed to be taken a few months only, and never again. So I decided that’s what I wanted.
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@Dechi, my infectious disease doctor wants me on it but I deferred for the time being until more results come in (plus I've just come off a long torturous abx protocol; I need a break). The excitement - in terms of humans trialing it - stems from a study done by Dr. Ken Leigner. I respect Leigner. But the study size was just three people. Meanwhile, Brian Fallon has launched a full-fledged study in association with the NIH. I think it kicked off this past Spring or so.

Nevertheless, many Lyme patients have doctors willing to give it a go. Lymenet is a Lyme forum, and old time Lyme patients from 5, 10, 15 or more years ago are coming back to report that they are trying Disulfiram. They've been sick all this time, and many had given up hope, but they are stepping up to try this. I thought, like me, you'd like to see what they are reporting. If so, here is a link:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/137824

It's an interesting read. A lot of hope in there. Some fear, too. And it's still unfolding.

Good luck with your treatment.
 
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duncan said:
But the study size was just three people. Meanwhile, Brian Fallon has launched a full-fledged study in association with the NIH. I think it kicked off this past Spring or so
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My doctor says he’s having good results so far. He started using it on his patients about six months ago. I’m part of a research trial, I don’t know if it will be published.

duncan said:
I thought, like me, you'd like to see what they are reporting. If so, here is a link:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/137824

It's an interesting read. A lot of hope in there. Some fear, too. And it's still unfolding.
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Because I have GAD, I have decided not to read anymore on the subject, for fear it will trigger so much anxiety that I won’t want to pursue. I will read it later, much later. Thank you.

duncan said:
Good luck with your treatment.
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Thank you !
 
Dechi said:
My doctor says he’s having good results so far. He started using it on his patients about six months ago. I’m part of a research trial, I don’t know if it will be published.
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That's interesting, @Dechi. Do you have any information about whether the research trial is registered somewhere we can read the protocol?

And do you know whether it's a trial for Lyme or CFS?
 
After posting my question, I did a search on clinicaltrials.gov and found this one:
Disulfiram: A Test of Symptom Reduction Among Patients With Previously Treated Lyme Disease

Brief Summary:
Approximately 10-20% of patients experience ongoing symptoms despite having received standard antibiotic therapy for Lyme disease.

Possible explanations for persistent symptoms include persistent infection and/or post-infectious causes.

Recent in vitro studies indicate that disulfiram is effective at killing both the actively replicating and the more quiescent persister forms of Borrelia burgdorferi, the microbe that causes Lyme Disease.

In this study, the investigators are examining the safety of disulfiram among patients with post-treatment Lyme disease symptoms. The investigators are also conducting a preliminary investigation regarding the relative benefit of 4 vs 8 weeks of treatment with disulfiram.
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@Dechi, I will understand if you don't want to answer whether this is the study you are involved in.
 
Trish said:
That's interesting, @Dechi. Do you have any information about whether the research trial is registered somewhere we can read the protocol?

And do you know whether it's a trial for Lyme or CFS?
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i don’t have the information on hand but I can ask next time I see my doctor (it will be after the holidays). The trial is for Lyme.

Trish said:
I will understand if you don't want to answer whether this is the study you are involved in.
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I doubt that it’s the same one. I think mine is a small local study.
 
Update after 5 weeks on Disulfiram : there seems to be something happening, but it could be either good or bad. I still have most of my symptoms, except I haven’t slept during the day for two weeks. (I do have side effects though and I’ve had to lower my dose). I also have been able to do more around the house than usual.

So I’m at the point where I’m wondering if the medication is starting to work, or if it’s just keeping me awake and eventually I will just crash for it because it’s « artificial » energy.

Unless the side effects become too severe, I will be on it at least 1 more month before we decide if it’s working or not, and possibly another one.
 
Dechi said:
@JES yes, I’m still on it but I’m seeing my doctor soon and hoping to stop. This medication has done nothing for me, and it has severe side effects. I could not go up as high as I was supposed to because of that. I’ve been on it for 3+ months now and I definitely need a break from it.
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Thanks for the update, I got the impression too that disulfiram tolerance is quite poor and the effect is a hit or miss based on the experiences of Lyme patients reported in Facebook groups.
 
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I tried Disulfiram for nearly a year. It felt like my symptoms were slowly improving over the first few months, then I had a pretty sizable relapse. (I just posted a lengthly introductory thread if anyone here in curious in my history and diagnoses.)

The research on Disulfiram is very interesting, but ultimately I am unconvinced until the Fallon trial reports anything. (Does anyone know if that is still going on? @duncan?)

There are a few very large Facebook Groups where large numbers of patients are treating with Disulfiram, some with an MD and others without. There are a large number of people who are reporting side effects, psychiatric issues, and even reports of withdrawals after ceasing the medication. (Apparently Disulfiram is a dopamine inhibitor.) Add that to the fact that Chronic Lyme is not exactly a stringent, clear-cut diagnosis. It's frankly quite a mess, and probably the exact thing that this forum likes to warn against.
 
I tried it for 4-5 months I think. Very potent drug, you need to do regular blood work to make sure you’re not causing damage. It didn’t do anything for me, except give me side effects.

My doctor stuck with the ME diagnosis since I wasn’t responding.
 
5vforest said:
(Does anyone know if that is still going on? @duncan?)
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Welcome, @5vforest ! I think Fallon's NIH excursion was slated to wrap up early this Spring. I'm not sure if covid has caused delays.

The good news is it's a structured study. Bad news is I think it's on the small size, like 24 or so patients. With an annual infection count in the US alone approaching 500,000 Lyme cases, I'm not sure how they can extrapolate anything meaningful, irrespective of results. Perhaps it's only meant to be a kick-starter...

There's an irony in here somewhere. So, DSF was kinda like a suggestion if the other standard methods i,e, antibiotics, fall short. A problem arises in that in many Lyme patients who have taken long term abx, Candida or other yeast infections can occur. A byproduct is ethanol - which purportedly can react in a very nasty way to DSF, effectively preventing the patient from taking DSF in lieu of abx.

I think Leigner published subsequent case studies, around 30 if my memory is working.

Some people swear by DSF, others at it.
 
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How could they not get 24 Lyme patients when Columbia is literally surrounded by areas that can be characterized not merely as Lyme endemic, but arguably Lyme epidemic? You've Connecticut to the northeast, Long Island to the east. New Jersey and PA to the west.

Puzzling.
 
Maybe an incorrect assumption on my part. but i was definitely expecting some sort of update or results by now, not for them to still be recruiting.
 
The trial coordinator got back me to me super quickly. I don't think I am a good candidate for various reasons (I have already tried the drug, being the foremost) but I would consider participating otherwise.
 
If you test positive for duncani then you're automatically excluded. Check out exclusions. One is if patient is infected with any other tick-borne disease.
 
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